Summary:

When literature and cultural studies professor Michael Bérubé's son James was born in 1991, he was diagnosed with Down Syndrome. Negotiating various medical, social, and educational environments and the identities each assigns their son, Bérubé and Janet Lyon (his wife, a literature professor and former cardiac-ICU nurse), become effective advocates for Jamie and embark on a course of questions about the social systems that produce disabled identities and administer to those human differences termed significant ones. Bérubé engages these questions with a mixture of family experience (his own, and that of other families with disabilities), historical research, critical theory, and sophisticated critical analysis.

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This book's title is from a Goethe poem, "The Holy Longing," translated from German in its entirety by Robert Bly: "And so long as you haven't experienced / this: to die and so to grow, / you are only a troubled guest / on the dark earth." Ten intensely personal essays tell of the suffering and everyday presence of pain of a severely disabled writer who has advancing multiple sclerosis, and of how, "in a very real sense, and entirely without design, death has become [her] life's work." (p. 13)

Beginning with her father's sudden death when she was a child, the essays describe her aging mother's expected death and the family's decision to take her off life support; her caretaker husband's diagnosis of metastatic cancer with uncertain prognosis; her own attempted suicide; death of friends, pets, including her beloved dog; and a young pen-pal executed on death row. If that weren't enough, a coda, her foster son's murder and again the decision to remove life-support, provides "[t]he end. For now." (p. 191)

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One 1970s summer, Madeleine L'Engle brings her mother to Crosswicks, the rambling country house where the extended family has spent extended vacations for many years. At ninety, the elder Madeleine is suffering from the ravages of the now vanished diagnosis, 'hardening of the arteries.' By times she is frightened, angry, or difficult; at night she cries out or tries to wander. Round-the-clock caregivers help with the strain, while the writer's own children and grandchildren figure in her journal with concern, affection, and wonder.

The presence of the dwindling old lady provokes detailed recollections--direct and indirect memories--of the lives of her mother, grandmother, and great-grandmother, all named Madeleine--bringing the span of this narrative to six generations. Despite the grandmother's slow mental decline, death comes suddenly, while L'Engle is away and her son is left to help.

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This is a memoir of the author's troubled teen years. It begins in 1955 with Toby and his divorced mother driving west from Florida, running from her abusive boyfriend and with the cockeyed scheme of striking it rich in the Utah uranium fields. When that doesn't work out, they go on to the West Coast, where the mother moves around in search of work and fends off that boyfriend and a number of other undesirable suitors. Tragically, she finally marries Dwight, a controlling and abusive man who makes both her and Toby miserable.

Much of the memoir deals with Toby's desperate and often destructive attempts to survive under Dwight's reign of terror. Toby neglects his schoolwork and runs with some bad characters, and toward the end of the book he carries off an astonishing series of falsifications that leads to his being accepted for admission at a prestigious prep school. He doesn't last, and he winds up enlisting in the army, where he strangely feels "a sense of relief and homecoming."

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This memoir is DeBaggio's first-person account of his early experience of Alzheimer's disease and its effect on his life and the life of his family. The book is a collection, in loosely narrative form, of the author's diagnosis of early-onset Alzheimer's; brief excerpts from his journal; excerpts from the medical literature on the disease; and memories from his past that he wants to commit to paper before he can no longer recall them. He documents his struggle simply to write the book, as it becomes more and more difficult to sustain thoughts or find the words to express what he wants to say.

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Christ stopped at Eboli, say the southern Italians, meaning that they are "not Christian," uncivilized, forgotten, and deprived. Physician, writer, and painter, Levi was arrested and 'exiled' from his home in Turin for opposing Fascism during the Abyssinian war (1935). This is the memoir of his life as a political prisoner under house arrest in a malaria-ridden village in Lucania (Basilicata).

The peasants immediately seek his advice for their ailments, but the two local doctors are jealous, as well as incompetent, and they have him stopped. Grinding poverty, illness, superstition, and despair work on each individual in different ways; but the peasants move with the cycle of seasons and religious festivals. The feast of the black Madonna (Chapter 12) and an unforgettable pig castration (Chapter 19) are vividly described. In the 'atmosphere permeated by divinities' (p. 151), the animal, human, and spiritual spheres combine (Chapters 8, 13, 15).

The closing chapters are a political meditation. Deprivation and isolation make the south an irrelevant and different country to the powerful middle class that runs the Fascist party. In return, Fascism finds no supporters here other than corrupt, petty officials. Levi contends that "the State" of any political stripe will never solve the problems of southern Italy until peasants are involved.

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Born breech and deprived of oxygen for two hours, Irish poet and writer Christopher Nolan was diagnosed with cerebral palsy and is unable to speak and virtually unable to move voluntarily. His book, subtitled "The Life Story of Christopher Nolan," is narrated as a third person account of the life of "Joseph Meehan." The memoir opens with Meehan's winning the British Spastics' Society Literary Award for his first book of poetry, Dam-Burst of Dreams (1988) and ends with his last day at Trinity College, having turned down the invitation to continue his studies there towards a degree.

In the mixture of linear, traditional life narrative and lyrical, neologistic description that falls in between, the memoir addresses Meehan's birth, early life, education, and growing acclaim as a poet and writer. It recounts how his family and teachers helped develop a combination of medication, tools (a "unicorn-stick" attached to his forehead), and assistance that allowed him to type.

It details, above all, how various family, friends, and health and education professionals advocated Meehan's special-school and mainstream education and made available to him such normative life experiences as riding a pony, boating, fishing, skipping school with his mates, and going on school trips without his parents--and such unusual life experiences as becoming an award-winning writer.

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Ruth Picardie was a journalist working in London. Shortly after her marriage in 1994 to Matt Seaton, also a journalist, she found a breast lump. After testing, she was told it was benign. Two years later, and a year after giving birth to twins, the lump enlarged and this time she was diagnosed with advanced, inoperable breast cancer. She rapidly developed bone, liver, and brain metastases and died in September 1997, aged 33.

This book consists of a selection of Picardie's e-mail correspondence during the last year of her life, the columns she wrote for the Observer newspaper (a series about dying she called "Before I say goodbye"), readers' letters responding to her column, and an introduction and epilogue by her husband. While not, then, strictly a memoir, this collection of texts constitutes an intimate view of a witty, angry young woman undergoing an intolerable illness.

The expected elements are there: diagnosis, chemotherapy, radiation, hope, the loss of hope. What is unexpected is the way these are presented, and the vividness with which we share the prospect of saying good bye to her children, her gradual detachment from her husband, and, as the brain metastases spread, the loss of coherence and the appalling silencing of her powerful voice.

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This book presents the "War of Attempted Secession" through the eyes of America's great poet. It consists of letters, dispatches, articles, and prose selections from Specimen Days (1882), Whitman's quasi-autobiography. In addition, all of Whitman's Civil War poems are included, some interspersed through the text and others collected in an Appendix.

The editor has arranged this material into 14 thematic chapters, beginning with "an introductory section in which Whitman discusses the general character of the Civil War" and including chapters containing material on his visits to the front, life in Washington during the War, letters to his mother, his admiration for Lincoln, and other topics.

Of particular interest is "The Great Army of the Wounded," a chapter composed of dispatches to the New York Times and Brooklyn Eagle, in which Whitman describes the military hospitals surrounding Washington and his own work as a volunteer nurse, scribe, and friendly visitor. In "Dear Love of Comrades," he presents a number of "specimen" cases of sick or wounded soldiers. "O My Soldiers, My Veterans" consists of letters written to soldiers, or for soldiers to their families. Another chapter, "Ethiopia Saluting the Colors," presents Whitman's positive assessment of black regiments serving in the Union Army.

Many of the war poems appear in topically appropriate chapters; among the most effective of these are "A Twilight Song," "Over the Carnage Rose Prophetic a Voice," "Pensive on Her Dead Gazing," "Dirge for Two Veterans," "Ethiopia Saluting the Colors," "O Captain! My Captain," and The Wound Dresser (see annotation in this database).

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Nan Shin was an American woman living as a Zen Buddhist nun in France. She is diagnosed with advanced uterine cancer, undergoes surgery and chemotherapy and, by the end of the book, it appears, is dying. Her account does not, however, take the conventional form of the illness narrative; in fact its form might be called anti-narrative, for its focus is not on the story of Shin's illness and dying, but rather on the "every day living" that is at the center of her Zen beliefs.

The book consists of several strands that recur in alternating sections. One strand describes, in minute detail, the course of a single day's devotions and activities in the life of a Zen nun. Another traces the author's travels in the United States with her sensei, an astonishing man whose perspective on American culture is both detached and hilariously insightful.

A third tells of the author's frequent horseback rides through the French countryside, with beautifully focused and precise descriptions of the natural surroundings. Finally, there is the illness, presented matter-of-factly but conveying powerfully the author's (not always wholly successful) efforts to put into practice, in such trying circumstances, all she has learnt as a practitioner of Zen.

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